Knight, RWJF Partner to Make Health Data Available to Researchers

The John S. and James L. Knight Foundation, in partnership with the Robert Wood Johnson Foundation, has announced the launch of the Open Humans Network, a project aimed at breaking down barriers that make it difficult for individuals to access and share their health data with researchers.

Created by researchers from Harvard, New York University, and the University of California San Diego and backed by $1 million from Knight and $500,000 from RWJF, the network, which was a winner of the Knight News Challenge on Health, will create an online portal that helps match people who want to share their health data with researchers who can benefit from access to more data. The premise behind the project is that more individuals will agree to participate in scientific studies if they are empowered to share their data, and that the larger volume of shared data will enable scientists to conduct more studies and produce more meaningful results.

Researchers can join the network at openhumans.org by adding their studies to its data-sharing framework. Individuals can join and participate in studies that are part of the framework by importing their data into a profile on the network website. At launch, the site invites members to join three studies: "American Gut," which explores the microbial diversity of the human body; "GoViral," which profiles viruses related to flu-like illness; and the "Harvard Personal Genome Project," which collects genomic, environmental and human trait data. With shared data from the studies, researchers hope to glean new insights made possible by combining data, for instance, whether a person's gut microbiome influences one's susceptibility to the flu.

"Think of it as open-sourcing your body," said the project's director, Jason Bobe, who also runs the project's parent organization, PersonalGenomes.org. "There is tremendous potential for accelerating medical discoveries by helping individuals take their health and personal data out of data silos and making the data more broadly used."

"How to Donate Your Body to Science — Without Having to Die." John S. and James L. Knight Foundation Press Release 03/24/2014.